Orbital myositis

Hello everyone,

This is my first time posting! I am ready to tell my story, I want feedback please!!
At the end of July, july 29th to be exact. I lost all vision in my right eye. I went to the ER and they weren’t sure what to do. I went to another ER not sure. Thought I had MS, or optic neuritis. With vision gone, I went to a Neuro-opthomogolgy office and they also weren’t sure what to do! My eye was swollen, it went droopy and I was in so much pain.
With a million different thoughts of diagnosis I gave up and went to the nearest children’s hospital. Saw a rheumotogist who is my life saver! I was ready on high dose of prednisone, and I loved it! But hated it also…worst enemy, but best friend :slight_smile: anyway! by this time it was October and I FINALLY got a diagnosis, which was orbtial myositis. My eye muscles have zero hope. I am on prednisone still, along with methotrexate and Remicaide!

If anyone knows anything about OM, or knows anyone with this please get ahold me of me!! I would love to talk!

Taylor welcome to our group, I am so sorry that you are having such problems that I have never heard of in Myositis family before. I sure will keep my ear to the floor for you and hope you stay safe. I would love to visit with you any time and will be praying for you each day stay strong honey and maybe there is something to help you. Bethann

It is very rare, which is pretty awful! thank you! it means a lot :)


Hey Taylor! I'm Whitney and this past January I was diagnosed with Orbital Myositis! I can say I am happy to see your post since this diagnosis has really gotten me down. I would love to talk!